CCVI Trolley Run - 30th Annual - #teambeau

Beau Nolan Hash was born on July 8, 2016. Before we could even hold him, he was taken to the NICU where he would spend the first 17 days of his life. After being tested day after day due to a low oxygen count, Beau was diagnosed with pulmonary hypertension, severe reflux that would cause him to turn blue and stop breathing as well as a small hole in his heart (which has since closed).
During his 3 month appointment, Beau's pediatrician noticed he could not hold his head up so she suggested physical therapy. By his 4 month check up, he didn't show any improvement so he was sent to see a neurologist at our local children's hospital. The neurologist said he had some mild hypotonia, but she could see nothing else wrong. We were asked to follow up with her in 6 weeks and she would run some tests to check for any disorders.
Around the same time, his pediatrician also noticed that he wasn't tracking well with his right eye. After a few appointments with an ophthalmologist, Beau was diagnosed with Duane's Syndrome. This is a condition that causes Beau's eye to not turn out. The nerve is missing so there is no treatment or a cure. Because of this diagnoses we were asked to contact the Children's Center for the Visually Impaired. There, Beau had a vision evaluation and we were able to meet with some of the teachers and coordinators who helped us to find specialists and therapists that could aid in Beau's development while we searched for a diagnosis.
After several neurology appointments, Beau was sent to have his genetics tested. He was tested for over 2,000 genetic disorders. In April of 2017, Beau was diagnosed with a mutation of the GNAO1 gene. The difficulty with this disorder is that it was only discovered 5 years ago. The effects of this disorder were only discovered 1-2 years ago. Beau's future is unknown due to the fact that there is no long term research assisting in therapies or even a cure for this disorder. We only have a few pieces of information as of now. Beau is developmentally delayed, but we know he's smart. He is unable to use his muscles in a deliberate manner which sometimes causes voluntary and involuntary movements that may or may not progress over time. Beau is not yet able to roll over, sit up, feed himself or crawl. As you can imagine, watching your child have a difficult life has been our worst nightmare. We are devoting our lives to helping him develop and be as happy as possible.
The one constant bright spot has been the assistance we have received from CCVI. Even though he not yet a student of CCVI, we have received both personal and professional advice in caring for Beau. We attend music class, swim therapy and are in a playgroup with other children who may have delays which helps us feel like we are not alone. They have connected us with a physical therapist that has become a part of our family and given us more hope and happiness that any other doctor or specialist could possibly provide. The teachers at CCVI truly care about the children they serve. They do everything they can to make children live the best life possible. The care and comfort they give is immeasurable. My first time meeting some of the staff of CCVI, I asked if they had ever seen a child like Beau? They replied, "All the time!" When your child has a rare disorder, you often feel alone and like no one understands the struggles you have to deal with day to day. The staff at CCVI were the very first people to make us feel like everything was going to be okay and we weren't alone.
There is no other facility in the Kansas City area that does what CCVI does. Please join #teambeau in supporting CCVI and the many children who are a part of this amazing school. There is no way we could ever repay their staff for all they have done for our family.

Connect with others about this event and see who's going!

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Contributors on Behalf of #teambeau

Event Participants

1. Anonymous - Children's Center for the Visually Impaired Family Team Member
2. Tim Bettega - Children's Center for the Visually Impaired Family Team Member
3. Rebecca Gehrer, Rae McDaniel - Children's Center for the Visually Impaired Family Team Member
4. Heather Hering - Children's Center for the Visually Impaired Family Team Member
5. Ann Brewer - Children's Center for the Visually Impaired Family Team Member
6. Brad Potter, Kristen Potter - Children's Center for the Visually Impaired Family Team Member
7. Melissa Pyrant, Sara Pyrant - Children's Center for the Visually Impaired Family Team Member
8. Keri Pratt - Children's Center for the Visually Impaired Family Team Member
9. Leslie Welner, Sawyer Welner - Kids' Trolley Run (ages 10 and under)
10. Lindsay Peters - Children's Center for the Visually Impaired Family Team Member
11. Matthew Lane - Children's Center for the Visually Impaired Family Team Member
12. Ashley Hacker - Children's Center for the Visually Impaired Family Team Member
13. Josh Hartman - Children's Center for the Visually Impaired Family Team Member
14. Stacy Shipley - Children's Center for the Visually Impaired Family Team Member
15. Jill Smith - Children's Center for the Visually Impaired Family Team Member
16. Sammi Hallenbeck, Alex Hallenbeck - Kids' Trolley Run (ages 10 and under)
17. Ella Potter - Kids' Trolley Run (ages 10 and under)
18. Ali Brous, Tanner Brous - Children's Center for the Visually Impaired Family Team Member
19. Carol LeVar, Sam LeVar - Children's Center for the Visually Impaired Family Team Member
20. Amy Ochs, Kelly Ledesma - Children's Center for the Visually Impaired Family Team Member
21. Anne LeVar-Hash, Grant Hash - Children's Center for the Visually Impaired Family Team Member
22. Courtney Hallenbeck, Ryan Hallenbeck - Children's Center for the Visually Impaired Family Team Member
23. Kayla Sloup, Aaron Sloup, Madelyn Sloup - Children's Center for the Visually Impaired Family Team Member
24. Ryan Rose, Megan Rose - Children's Center for the Visually Impaired Family Team Member
25. Austin Muckenthaler, Annie Muckenthaler - Children's Center for the Visually Impaired Family Team Member
26. Jeremy Dunn, Emily Dunn - Children's Center for the Visually Impaired Family Team Member
27. Lindsey Yeager, Jason Yeager - Children's Center for the Visually Impaired Family Team Member
28. Griffin Brous, Easton Brous - Kids' Trolley Run (ages 10 and under)

Donors

1. David/Jodi Swinehart - Make a Donation
2. Peggy Hess - Make a Donation
3. Beth Jantsch - Make a Donation
4. Mike Palmer - Make a Donation
5. Jeff and Jen Zimmerman - Make a Donation
6. Valerie Fleming - Make a Donation
7. Little Learners - Make a Donation
8. Debbie Apple - Make a Donation
9. Michael & Linda Hash - Make a Donation
10. Michael & Linda Hash - Make a Donation
11. Clinton & Teresa Dunn - Make a Donation
12. Randy & Marcia Bowden - Make a Donation
13. Chris and Nicole Corsair - Make a Donation
14. Rod & Susan Anderson - Make a Donation
15. Joan Randall - Make a Donation
16. Shelby Leiker - Make a Donation
17. Linda Albee - Make a Donation
18. Tom Ansley - Make a Donation
19. Allison Apple - Make a Donation
20. David & Glenda Long - Make a Donation
21. Jean & Jeff Gatlin - Make a Donation
22. Beth Jantsch - Make a Donation
23. Thomas & Mary Kay Sillyman - Make a Donation
24. Arlyn & Sandy Burns - Make a Donation
25. Marilyn Small - Make a Donation
26. Jaclyn Hammond - Make a Donation
27. Debbie Lark - Make a Donation
28. Amber Kuykendall - Make a Donation
29. Sherry Pyrant - Make a Donation
30. Hollie Johnson-Berndt - Make a Donation
31. Anthony Przybylski - Make a Donation
32. Tori Burnett - Make a Donation
33. Kelly Hash - Make a Donation
34. Sarah Aligo - Make a Donation
35. Carol Jo Stealey - Make a Donation

Sub-groups

1. Yeager family

#teambeau has raised $2,415.00.
#teambeau has a goal of raising $1,000.00.

progress: 241.50%